mental health consumers' experience of stigma · 2017. 4. 20. · mental health...

Mental Health Consumers' Experience of Stigmaby Otto K Wahl

AbstractThe extent to which mental health consumersencounter stigma in their daily lives is a matter of sub-stantial importance for their recovery and quality oflife. This article summarizes the results of a nation-wide survey of 1,301 mental health consumers con-cerning their experience of stigma and discrimination.Survey results and followup interviews with 100respondents revealed experience of stigma from a vari-ety of sources, including communities, families,churches, coworkers, and mental health caregivers.The majority of respondents tended to try to concealtheir disorders and worried a great deal that otherswould find out about their psychiatric status and treatthem unfavorably. They reported discouragement,hurt, anger, and lowered self-esteem as results of theirexperiences, and they urged public education as ameans for reducing stigma. Some reported that in-volvement in advocacy and speaking out when stigmaand discrimination were encountered helped them tocope with stigma. Limitations to generalization ofresults include the self-selection, relatively high func-tioning of participants, and respondent connections toa specific advocacy organization—the NationalAlliance for the Mentally 111.

Key Words: Mental illness, stigma, discrimination,mental health consumers.

Schizophrenia Bulletin, 25(3):467^J78,1999.

Mental illness stigma is a matter of great concern to men-tal health advocates. Negative responses to people whohave been identified as having a mental illness are seen asa major obstacle to recovery, limiting opportunities andundermining self-esteem (Fink and Tasman 1992). Notsurprisingly, stigma also has been the subject of substan-tial social science research. Seminal work by ErvingGoffman (1963) and Thomas Scheff (1966) described thestigmatizing process that may follow from being identi-

fied as having a mental illness, and numerous researchstudies have attempted to demonstrate the unfavorableeffects of mental illness labeling.

One type of stigma research involves self-reportsfrom the general public. Population samples are asked tostate their opinions about mental illness and people withmental illnesses (e.g., Nunnally 1961). Other public opin-ion studies present specific statements about mental ill-ness and ask respondents where they stand with respect tothose statements (e.g., Cohen and Struening 1962; Taylorand Dear 1981; Yankelovich 1990; Beldon andRussonello 1996). Early studies revealed strikingly nega-tive attitudes toward mental illness (see Rabkin 1974).More recent surveys suggest improved attitudes: themajority of people in a 1993 Parade Magazine survey, forexample, agree that "more tax money should be devotedto caring for the mentally ill" (Clements 1993) and 60percent of those in another survey (Beldon andRussonello 1996) say they would support a group homefor people with mental illness in their neighborhood.

Another type of stigma study uses vignettes or pro-files of individuals and study participants' ratings of thepeople described. Identical descriptions of behavior werefound to produce more social rejection, more fear, andmore negative expectations when they were accompaniedby information that the individual being described has ahistory of psychiatric disorder or treatment (Whatley1959; Philips 1966; Neff and Husaini 1985; Purvis et al.1988; Riskind and Wahl 1992).

Finally, there are-analog behavior studies, in whichpeople are led to believe they are dealing with a personwith mental illness. Such studies fairly consistently findthat inclusion of information about past psychiatric treat-ment leads to decreased success in applying for housing,employment, arid school admission, and that identificationas a patient leads to condescension and biased interpreta-tion of behavior on the part of others, including mental

Reprint requests should be sent to Dr. O.F. Wahl, Dept. of Psychology,George Mason University, Fairfax, VA 22030; e-mail: [email protected].

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Schizophrenia Bulletin, Vol. 25, No. 3, 1999 O.F. Wahl

health professionals (Farina and Felner 1973; Farina et al.1973; Rosenhan 1973; Page 1977; Dovidio et al. 1985;Sibicky and Dovidio 1986; Oppenheimer and Miller1988). More extensive reviews of these three types ofstudies and their results have been provided by Rabkin(1974) and Link et al. (1992).

What is conspicuously absent from these explorationsof mental illness stigma is the mental health consumer—the person with the mental disorder who is presumablythe recipient of stigma. The relatively few studies thathave sought information directly from mental health con-sumers provide evidence that they experience themselvesas stigmatized (e.g., Campbell and Schraiber 1989;Mansouri and Dowell 1989; Herman 1993), expect to betreated poorly by the public (e.g., Link 1987; Link et al.1989), encounter rejection and discrimination (e.g.,Herman 1993; Link et al. 1997), suffer demoralizationand reduced life satisfaction connected to stigma (e.g.,Link 1987; Rosenfield 1997), and employ specific strate-gies to protect themselves from expected rejection anddiscrimination (e.g., Link et al. 1991; Herman 1993;Reidy 1993). Most of these studies have been confined tospecific groups or locations; for instance, the largest ofthese studies (Campbell and Schraiber 1989) involved331 consumer respondents in California. Others involvedmembers of a Staten Island patient support group(Freedom From Fear 1991), former hospital patients fromSouthern Ontario, Canada (Herman 1993), and patientsfrom New York City hospitals (Link 1987). In addition,these studies focused on general impressions and expecta-tions of stigma rather than on specific experiences (e.g.,Mansouri and Dowell 1989; Freedom From Fear 1991).

In part, the limited number of studies seeking inputfrom mental health consumers may be due, first, to thebelief that one can accurately infer from the apparent atti-tudes of the public what must be the experience of thosewith mental illnesses; or, second, to the desire for a morecontrolled (experimental or laboratory) methodologythrough which to gather data. Omission of consumer per-spectives may be due, as well, to a desire not to intrudeinto the lives of people already sufficiently burdened andto a belief that those whose disorders often impair theirperceptions and cognitions may not be able to accuratelydescribe their experiences. However, the neglect of first-hand reports may also be simply an extension of the gen-eral neglect of consumer input in all mental health efforts,including research—a neglect that may itself be a reflec-tion of stigma and of devaluation of those with psychiatricdisorders.

Whatever the causes, self-report and experimentalanalogs are no substitute for information about real-lifeexperiences. To truly understand and appreciate whatstigma is and how it affects people with mental illnesses,

we have to hear from the ones who face that stigma on adaily basis. They can best inform us—from their own per-sonal experiences and in their own words—what stigmais, what it does, and how it is conveyed.

In addition, the concept of empowerment that isgrowing in importance in discussions of treatment ofmental illness demands that mental health consumers beincluded in research about their lives. Rapp and col-leagues (1993), for example, have noted that "one of thereasons for the dominance of person-blaming interven-tions and research is that the people [whom clinicians]seek to help have not been judged to be important infor-mants" (p. 729). The idea that listening to mental healthconsumers and providing opportunities for them to telltheir unique stories are important strategies of empower-ment and self-esteem enhancement has been echoed byothers as well (e.g., Campbell and Shraiber 1989;Rappaport 1995; Corrigan and Garman 1997).

The current study was undertaken, therefore, toexpand knowledge of mental illness stigma through alarge-scale, nationwide inquiry about the experiences ofpersons with diagnosed psychiatric disorders, and, in sodoing, to empower consumers with the opportunity todescribe what life has been like for them.

Methodology

Consumer experience survey: The first part of the studyinvolved the distribution of a survey concerning specificstigma and discrimination experiences. Identification ofcommonly reported stigma experiences through examina-tion of first-person accounts of mental illness, such asthose appearing regularly in the Schizophrenia Bulletinand the Journal of the California Alliance for theMentally III, led to an initial selection of experiences toinclude in the survey. In addition, input from a consumermember of the research team and from representatives ofthe National Alliance for the Mentally 111 (NAMI) wasobtained. Finally, we sought feedback from members ofNAMFs Consumer Council on both content and wordingof a pilot instrument and used that feedback to develop afinal survey form.

The final survey had three main sections. The"Stigma" section included nine questions about people'sinterpersonal experiences as "consumers." Questionsaddressed such topics as specific treatment by others (e.g.,being shunned or rejected), negative things seen or heardabout mental illness (e.g., in mass media), and fears andbehaviors related to disclosure of status as consumers.Respondents were asked to rate the extent of each experi-ence on a 5-point scale from "never" to "very often."

The "Discrimination" section presented 12 itemsintended to explore the extent to which consumers had

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Mental Health Consumers' Experience of Stigma Schizophrenia Bulletin, Vol. 25, No. 3, 1999

experienced discrimination in such activities as renting anapartment, getting a job, volunteering, and obtaining alicense. It also included items related to treatment in legaland law enforcement contexts, as well as an item concern-ing avoidance of disclosure of consumer status on writtenapplications. Again, items were rated on a 5-point scale offrequency of occurrence from "never" to "very often."

The third section requested demographic and diag-nostic information—age, race, marital status, employ-ment, diagnosis, living situation, and hospitalization his-tory. In addition, respondents were encouraged toelaborate on their ratings and write in additional informa-tion if they wished.

Survey participants were sought from three mainsources. First of all, the survey was published in theMay/June 1996 issue of The Advocate, the NAMI news-letter (Wahl 1996). Second, each of the 30 members ofNAMI's Consumer Council was given packets of ques-tionnaires to distribute to consumers in his or her homelocation. Third, the survey was posted on the NAMIInternet site, so individuals could complete and return thequestionnaire electronically. Completed surveys alsocame from other, unplanned sources. For example, peoplesometimes called to request copies of the questionnaire todistribute at the mental health facility where they worked.In all cases, participants had the option of respondinganonymously.

Interviews. One hundred respondents to the written sur-vey were selected for interviews through use of a randomnumber table and a series of decision steps intended toensure that interviewees were reasonably representative ofthe larger survey sample (e.g., taking only 10 personsfrom each consecutive group of 100 respondents).Interviews were conducted by telephone, tape-recorded,and later transcribed and coded. Interviewees wererequested, first of all, to describe one or more specificexperiences that they had rated as occurring often or veryoften. Further queries involved what the person's behav-ioral and emotional reactions had been, how the experi-ences had affected his or her life, and what strategies hadbeen useful in dealing with stigma. Finally, intervieweeswere asked for their ideas about how stigma might bereduced and what one message they would like to givepeople about mental illness. Interviews were conductedby trained doctoral students in clinical psychology andlasted between 25 and 60 minutes.

Survey Results

Participants. Altogether, 1,301 completed question-naires were received between June 1 and November 1,1996. As shown in table 1, substantial numbers of respon-

Table 1. Demographic characteristics of surveyrespondents and interviewees

Characteristic

Geographical sourceStates representedNo. of ZIP Codes

Distribution source, %NAMI AdvocateConsumer CouncilInternetOther

Age, yearsRangeMean

Sex, %FemalesMalesUnknown

Marital status, %Single, never marriedMarriedDivorcedWidowed

Race, %CaucasianAfrican-AmericanHispanicAsianOther

Educational level, %Did not complete

high schoolCompleted high schoolAttended, but did not

complete, collegeCompleted collegeGraduate/professional

degree

Employment status, %Never employedNot employed, butworked previously

Employed part-timeEmployed full-time

Current living situation, %Independent living inhome or apartment

Living with parents/otherfamily membersSemi-independent living

in supervisedhome/apartment

Surveyrespondents(n = 1,301)

49737

6720104

121-9441.9

5640

5

432623

3

8010

10.55

1317

2722

17

3

472019

61

17

12

Interviewees(n=100)

4398

741790

22-7242.7

7129

0

313036

2

849003

211

3330

24

1

552221

77

19

2

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Table 1. Demographic characteristics of surveyrespondents and interviewees—Continued

SurveyRespondents

Characteristic (

Currently under hospitalcare

No current residenceOther

Diagnosis, %Bipolar disorderSchizophreniaMajor depressionSchizoaffective disorderMultiple diagnosesOther

Age at first diagnosis, yearsRangeMeanMode

Number of hospitalizations,Never hospitalized1-5 times6-20 times21-30 times30+ timesRangeMean

Indicated a willingnessto be interviewed, %

n = 1,301)

10.32

2519150.5

145

02-7525.718

%154324

320-985.9

61

Interviewees(n=100)

011

2817163

294

6-5525.520

144435

230-987.2

—

Note.—Not all respondents answered all questions. Thus, per-centages may not add to 100.1 Only two respondents were under age 18. Although their youngages (12 and 13) may raise questions about the accuracy of theirresponses, the author felt it was important to include everyonewho shared experiences through the survey.2 A zero age at first diagnosis indicates that respondents said theyhad been diagnosed within the first year of their lives; four madesuch a claim.

dents came from each of our distribution sources, with thegreatest number (67%) from the NAMI newsletter.Responses were received from 49 states plus Canada andIreland representing more than 700 ZIP code areas.

Respondents ranged in age from 12 to 94, with anaverage age of 42. Approximately 40 percent of thoseresponding to the survey were male and 56 percentfemale. Most were single, that is, either never married(43%), divorced (23%), or widowed (3%); only about onein four (26%) were currently married. The respondentsample was predominantly Caucasian (80%), and theytended to have at least some college education (66%): 39percent had completed college and 17 percent had earnedgraduate or professional degrees. The sample also

included people who had not completed (13%) or had notgone beyond (17%) high school.

Nearly half the respondents were not currently work-ing, although they had worked previously (47%). Morethan one in three (39%) were working either full-time orpart-time at the time of the survey. Most respondents(73%) characterized themselves as living independentlyor semi-independently (e.g., in supported communityhousing); very few respondents were currently hospital-ized (1%) or homeless (0.3%).

Respondents presented a diverse clinical picture aswell. The most frequent single diagnosis was bipolar dis-order (25%), with schizophrenia (19%) and major depres-sion (15%) also common. The modal age at which respon-dents were first diagnosed was 18. The vast majority ofrespondents (72%) had been hospitalized at least once,with a mean of six hospitalizations. The range was sub-stantial, however: 15 percent reported never having beenhospitalized, but 2 percent indicated they had experiencedmore than 30 hospitalizations.

Stigma Experiences. The most commonly reportedexperiences involved witnessing stigmatizing commentsor depictions of mental illness (see table 2). Almost 80percent of survey respondents indicated that they hadoverheard people making hurtful or offensive commentsabout mental illness; half reported noticing these often orvery often. (Note: Throughout the article, only events thatoccurred at least sometimes are considered to have a fre-quency worth noting.) Seventy-seven percent reportedencountering hurtful or offensive media portrayals ofmental illness at least sometimes; almost half (47%) indi-cated this occurred often or very often.

More direct experiences of stigma were also reported.Seven of 10 respondents noted they had at least some-times been treated as less competent by others once theirillness was known; such treatment occurred often or veryoften to more than one-third (36%). More than one quar-ter of the respondents (27%) found themselves often orvery often being advised to lower their expectations inlife; for example, they were counseled to reconcile them-selves to jobs well below their level of education, intel-lect, and training.

More than half of those responding to the survey(60%) reported that they had had the experience of some-times being shunned or avoided. For more than one infour (26%), such rejection was frequent. Less than half(47%) were able to say that friends who learned they wereconsumers had often or very often been understandingand supportive; one in six (16%) reported receiving suchsupport seldom or never.

Not surprisingly, given these experiences, the major-ity of respondents (74%) indicated that they had some-

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Mental Health Consumers' Experience of Stigma Schizophrenia Bulletin, Vol. 25, No. 3,1999

Table 2. Responses to survey stigma items (n = 1,301)

Item Never Seldom Sometimes Often Very often

I have worried that others will view meunfavorably because I am a consumer.

I have been in situations where I have heardothers say unfavorable or offensive things aboutconsumers and their illnesses.

I have seen or read things in the mass media(e.g., television, movies, books) aboutconsumers and their illnesses that I findhurtful or offensive.

I have avoided telling others outside myimmediate family that I am a consumer.

I have been treated as less competent byothers when they learned I am a consumer.

I have been shunned or avoided when it wasrevealed that I am a consumer.

I have been advised to lower my expectationsin life because I am a consumer.

I have been treated fairly by otherswho know I am a consumer.

Friends who learned I am a consumerhave been supportive and understanding.

137(11%)

125(10%)

133(10%)

177(14%)

146(11%)

235(18%)

305(23%)

48(4%)

62(5%)

128(10%)

146

(11%)

149(12%)

144(11%)

204(16%)

257(20%)

238(18%)

149(12%)

145(11%)

296(23%)

369(28%)

384(30%)

357(27%)

446(34%)

441(34%)

376(29%)

485(37%)

462(36%)

316(24%)

346(27%)

313(24%)

272(21%)

265(20%)

224(17%)

214(16%)

413(32%)

263(28%)

401(31%)

302(23%)

303(23%)

336(26%)

207(16%)

118(9%)

143(11%)

184(14%)

244(19%)

Note.—Not all respondents answered all questions. Thus, numbers do not sum to 1,301 and percentages do not total 100.

times, often, or very often avoided telling others outsidetheir immediate families about their mental illnesses.Avoidance of disclosure, however, appeared to provideonly some relief from stigma: fear of discovery remained.Fewer than one in four (21%) were able to say that theyseldom or never worried that others would view themunfavorably if their status as a mental health consumerwere disclosed; more than half (55%) said they worriedabout this often or very often.

Discrimination Experiences. There were few reportsof actual discrimination; the majority of respondentsreported that they had seldom or never been turned downfor a job, excluded from volunteering, or denied housingor education on the basis of their status as a mental healthconsumer (see table 3). However, the lower numbers ofconsumers reporting these experiences may be due, inpart, to consumers not being in situations where thesetypes of discrimination could occur. Approximately 20percent indicated that one or more of the survey's dis-crimination items were "not applicable" to them; hand-written comments conveyed that they had been employedonly through mental health programs, lived with parents,had not applied for volunteer positions, had never been

involved with the police or the courts, and so on. In addi-tion, 70 percent of those responding reported that they hadsometimes, often, or very often avoided disclosure of theirmental illnesses on applications for jobs, licenses, orhousing and thus may have been able to avoid possiblediscrimination. Furthermore, about 8 percent of respon-dents annotated their responses to explain that they hadnot disclosed or that they had even lied in one or more ofthe specific situations included in the survey.

Discrimination was far from absent, however, despitethe above limiting factors. Approximately one in threeconsumers (32%) reported that they had been turneddown for a job for which they were qualified after theirmental health consumer status was revealed. Even whensuccessful in-getting a job, some consumers found thework environment unfriendly, as evidenced by the morethan one-fourth (28%) of responding individuals whoindicated that coworkers and supervisors were seldom ornever supportive and accommodating when they learnedabout the respondent's mental illness.

Some consumers found that even their attempts tocontribute on a volunteer basis were stymied. More thanone in every five consumers indicated that they at leastsometimes had experienced trying to volunteer and were

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Table 3. Responses to survey discrimination items (n = 1,301)

Item Never Seldom Sometimes Often Very often

I have avoided indicating on written applications(for jobs, licenses, housing, school, etc.) that Iam a consumer for fear that information will beused against me.

I have been treated with kindness and sympathyby law enforcement officers when they learnedthat I am a consumer.

Coworkers or supervisors at work weresupportive and accommodating when theylearned I am a consumer.

I have been turned down for a job for whichI was qualified when it was revealed thatI am a consumer.

I have been denied mental health treatmentbecause my heath insurance was insufficientfor me to pay the cost of treatment.

I have been turned down for health insurancecoverage on the basis of my mental healthtreatment history.

I have been excluded from volunteer or socialactivities outside the mental health field when itwas known that I was a consumer.

I have been excluded from volunteer or otheractivities within the mental health field when itwas known that I was a consumer.

I have had the fact that I am a consumer usedagainst me in legal proceedings (such as childcustody or divorce disputes).

I have had difficulty renting an apartment orfinding other housing when my status as aconsumer was known.

I have been denied educational opportunities(for example, acceptance into schools foreducation programs) when it was revealedthat I am a consumer.

I have been denied a passport, driver's license,or other kinds of permits when I revealed thatI am a consumer.

Note.—Not all respondents answered all questions. Thus, numbers do not sum to 1,301 and percentages do not total 100.

turned down because of their illness. Moreover, this was third (32%) also indicated that they had sometimes, often,true for volunteering both within (20%) and outside or very often been denied treatment because their health(26%) the mental health field. insurance was insufficient to pay the cost of such treatment.

Discrimination in obtaining insurance was an issue

indicated in consumer responses, as well. Three out of 10 Interview Resultsreported that they had been turned down for health insur-ance, often by numerous carriers, because their mental ill- Interview Respondents. The 100 interviewees wereness represented a "pre-existing condition." About one- similar to the overall sample of respondents in many

472

239(18%)

353(27%)

184(14%)

605(47%)

664(51%)

697(54%)

690(53%)

776(60%)

831(64%)

784(60%)

858(66%)

955(73%)

86(7%)

150(12%)

187(14%)

155(12%)

155(12%)

103(8%)

188(15%)

167(13%)

81(6%)

135(10%)

129(10%)

89(7%)

196(15%)

292(22%)

365(28%)

217(17%)

196(15%)

152(12%)

204(16%)

162(13%)

114

(9%)

150(12%)

107(8%)

78(6%)

229(18%)

168(13%)

268(21%)

131(10%)

110(9%)

87(7%)

75(6%)

57(4%)

68(5%)

57(4%)

49(4%)

33(3%)

485(37%)

113(9%)

152(12%)

64(5%)

102(8%)

136(11%)

47(4%)

35(3%)

71(6%)

40

(3%)

32

(3%)

22(2%)


ways, as shown in table 1. They came from 43 differentstates and from distribution sources in proportionsroughly comparable to the overall sample. Again, bipolardisorder, schizophrenia, and major depression were themost common diagnoses, and as with the overall sample,interviewees were predominantly Caucasian. They werealso similar in age (mean 42.7 years vs. 41.9 in the largersample).

There were some differences, however. Intervieweestended more often to be female, college educated, and liv-ing independently than did the overall sample. In addition,interviewees were less likely to have never married butmore likely to have been divorced.

Interview Responses. One feature we looked at ininterviewees' descriptions of their stigma experiences wasthe source of stigma. The most commonly cited source(by 46 interviewees) was the general community (seetable 4). Interviewees described many different kinds ofresponses from neighbors and people they encountered onbuses or in community groups to which they belonged.

Table 4. Most common interview responsesabout stigma sources and impact

Stigma sourceGeneral communityFamilyCoworkers, colleagues, classmatesMental health caregiversEmployers, supervisorsFriends

Reaction to experiencesAnger, being offendedHurtTook specific corrective actionSadness, depressionDiscouragement, disappointment

Impact of stigma experiencesFelt a lasting impact

Number ofinterviewees

giving response(n=100)

463936282422

3328211817

95Hadiowered self-esteem or self-confidence 57Became less likely to disclose illnessIncreased avoidance of social contactBecame stronger or more motivated torecover

Became more guarded, less trustingBecame less likely to make application

(for jobs, school, etc.)

Experienced an increase in problememotions

3931

2927

21

14

Work environments were mentioned often, with 36 inter-viewees talking about the troubling behavior of coworkersand colleagues and 24 mentioning employers and supervi-sors. Stigmatizing occurred even with friends, accordingto 22 interviewees. As one described it: "I had one gal thatI worked with and we were pretty close together.... I toldher that I had had a nervous breakdown . . . and after that,she just kinda, we couldn't do anything together becauseshe would find an excuse."

Relatives were also described as sources of stigma;indeed, they were the second most commonly citedsource—by more than one-third (39) of the interviewees.Some spoke of being treated as less competent, asreflected in parental overconcern. Said one person: "Theystart watching you carefully. It's like getting the kid glovetreatment and that's irritating." Others reported outrightrejection by family. One interviewee noted how hisbrother, in his presence, denied to others that the two werebrothers. Another said, "I have a 27-year-old son who willnot speak to me because I am mentally ill."

More than one in four interviewees (28) complainedabout stigmatizing treatment from the people chargedwith their care. A recurring complaint again concernedbeing treated as less competent and being discouragedfrom setting high goals. Said one consumer: "Frequentlypsychologists and doctors [seem to believe that] all schiz-ophrenics . . . aren't capable and cannot achieve a highereducation." Another noted: "I've had case managers hintnot to push for the highest accomplishment I can doSometimes it would be nice if they would push for some-thing more than just sitting in chairs all day." Still anotherinterviewee described how the doctor who first diagnosedher bipolar disorder told her that "people with your prob-lem will have a very low level type of life."

In both interviews and remarks written on surveyquestionnaires, respondents also gave examples of dis-paraging remarks made by mental health caregivers. Onerespondent, for instance, reported: "I have worked at [apsychiatric facility]. As with many other facilities inwhich I have worked, the patients are spoken about withdisrespect, sometimes mocked, and often spoken to inshaming ways." Yet another commented similarly on hermedical school experience: "The treatment of psychpatients in all rotations was awful. They would laugh atthem, poke fun at them on rounds, disbelieve any physicalcomplaint they had."

Interviewee responses to questions about their reac-tions to stigma experiences revealed a variety of ways thatsuch experiences affect consumers. The most commonlyreported emotional reaction to stigma experiences wasanger, described by 33 interviewees (see table 4). Hurt(28), sadness (18), and discouragement (17) were alsoreported.

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Moreover, stigma experiences, according to intervie-wees, had a variety of lasting effects (see table 4). In fact,when asked, 95 of the 100 interviewees asserted that therehad been long-term consequences. More than half (57)talked about lowered self-esteem and loss of confidence inthemselves. They also noted how their experiences hadmade them less likely to disclose information about theirdisorders (39), more likely to avoid social contact (31),and less likely to apply for job or educational opportuni-ties (21). In addition, some interviewees described lastingeffects on their feelings about and expectations of others,indicating that their experiences had contributed to theirbeing less trusting of others, more guarded, and more sen-sitive to slight (27); some (14) reported that their stigmaexperiences had also contributed to the persistence ofsymptomatic emotions such as anxiety and depression.

There was some good news in what consumersreported about their reactions, as well. About one in five(21), for instance, indicated that they had been able totake some corrective action rather than just react emotion-ally: They spoke up and attempted to educate people whomade disparaging or incorrect statements about mental ill-ness, they filed appeals when they perceived discrimina-tion, and they persisted in attempting to obtain employ-ment or insurance. Some interviewees, furthermore,described being able to turn their negative encounters intopositives for themselves, indicating that these encountersstrengthened them, made them more resolved to recover,or both (29).

Interviewees also recommended a variety of strate-gies for coping with stigma (table 5). The most commonlycited coping strategy (by 44 interviewees) involved advo-cacy; these consumers found that involvement in orga-nized efforts to educate people about mental illness and tochange attitudes helped them to move beyond their imme-diate negative reactions to stigmatizing experiences.Similarly, some (18) reported that immediate direct con-frontation of stigma was empowering and self-enhancing.Limiting disclosure was cited as a strategy as well: 17interviewees stated that they were careful not to revealtheir status as a mental health consumer to anyone, andanother 13 used selective disclosure—that is, only to fam-ily, close friends, or other consumers. Still others foundexternal support to be helpful in dealing with their stigmaexperiences; in particular, involvement with other con-sumers, with whom they could feel accepted and under-stood, was cited as useful by 16 interviewees.

At the end of the interview, each interviewee wasasked for his or her advice about reducing stigma and fora statement about mental illness that he or she would likeothers to hear. Responses are summarized in table 5. Theanti-stigma strategy cited most often was public educationabout mental illness. Two-thirds (66) of the interviewees

Table 5. Most common interview responsesabout strategies and messages

Coping strategy usedAdvocacyConfrontation, challengeAvoidance, withdrawal, concealmentInvolvement with other consumersSelective disclosure

Number ofinterviewees

giving response(n = 100)

4418171613

Recommended anti-stigma strategies andmessages to othersPublic education about mental illnessis needed •

People need to be more understandingMental illness could happento anyone

Mental illness should be treated thesame as physical illness

People with mental illness need to begiven a chance

6639

28

19

17

indicated that people in general—and mental health care-givers in particular—needed to be better informed aboutmental illness for stigma to be reduced.

In terms of what consumers would like others toknow, the most common—and most impassioned—mes-sage was a plea for understanding and acceptance, offeredby 39 interviewees. Said one person: "Try to be under-standing and compassionate. Whenever you hear thatsomebody's got a mental illness, don't act like they'vedied or like they're worthless or they're no good anymore,they're ruined Esteem them as valuable humanbeings." Frequently this message was in the form of arequest not to be prejudged or stereotyped, but treated asunique and valued individuals. "Don't judge me untilyou've walked a mile in my shoes" was a theme repeatednumerous times. Still other forms of this messageincluded the following: "Think about it if it was you inthat situation, how would you feel if you were beingtreated the way you are treating people in that situation.""Don't take the preconceived notions You can't justtake the most severe form of mental illness and say thatthat's the way it is for everybody."

Requests for understanding were sometimes couchedin terms of reminders to others that persons with mentalillnesses are people like themselves and are individuals,not disorders: "People with mental illnesses, at somepoint, in some place, are just like everybody else. We gotthe same wishes and hopes and dreams and we have the

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same feelings I'm a person, not a disease." "Don'tjudge a person by their sickness. Judge them by who theyare underneath." "I am more than a diagnosis. I am awhole person and I deserve to be treated like a wholeperson."

Interviewees also wanted to remind others that men-tal illness could affect their lives as well—often anotherway of requesting empathy. Twenty-eight intervieweesemphasized that "mental illness can happen to anyone."One pointedly advised: "Please try to develop some toler-ance and patience because it could be you tomorrow."

Another message was that mental disorders are ill-nesses like physical illnesses, sometimes including theassertion that "mental illnesses are brain disorders." Thefact was used also to underscore the message that personswith mental illnesses are no different from other peoplewith physical illnesses and to remind others that mentalillness is not a character or motivational weakness. 'Tryto understand," said one consumer, "that it's not a matterof willpower, that it can't be mind over matter, that there'sas much of a biological basis for it as there is in any otherillness."

Discussion

How one interprets these results depends in part uponone's degree of optimism, tolerance, and expectations. Itis possible, for example, to look at these consumers'reports as encouraging. Fewer consumers reported beingshunned often or very often (26%) than reported seldomor never having had such an experience (38%). A majorityreported that they had seldom or never been discriminatedagainst in obtaining jobs or housing. Only one in six saidthat they had seldom or never been treated fairly by otherswho knew they were a consumer. That so many con-sumers seem to have been spared many of these stigmaexperiences may be seen as a positive result.

On the other hand, when one in four, or even one insix, people experience painful and demeaning events likethe ones consumers reported, that may be far too many. Tothe extent that the respondents in this study sample aresimilar to the much larger population of mental healthconsumers, results suggest that millions of people withmental illnesses may still find themselves shunned,avoided, and treated as less competent; may have wit-nessed themselves being the object of humor, intolerance,and insensitivity; and may have been discriminatedagainst in employment, in insurance, and in volunteer set-tings. Moreover, their experiences of stigma have notbeen just at the hands of strangers or in impersonal situa-tions; friends, family members, church congregations, andeven mental health caregivers reportedly have contributedas well. Looked at in this way, stigma and discrimination

against those with mental illnesses remain substantialproblems.

Results indicate, furthermore, that the experience of"indirect" stigma—negative remarks and media depic-tions of mental illness that are not directed toward anyparticular individual or that do not directly express opin-ions about persons with psychiatric disorders—is the mostcommon. The sources of such comments and depictionsprobably do not consider that their audiences mightinclude consumers who could be hurt by those remarks.Yet consumers are in many, if not most, of those audi-ences; and results suggest that they are sensitive to suchremarks, which serve as constant reminders of the lowesteem in which they are held.

Another result that points to communications thatpeople may not be aware are stigmatizing is the degree towhich consumers were sensitive to advice about loweringtheir expectations in life; more than half said this hadoccurred at least sometimes. Clinicians and families oftenfeel they are doing consumers a service by helping themto take what seems to be a more realistic view of their sit-uation and to steer consumers away from challenges thatmay be too stressful and risk relapse. Consumers in oursurvey, however, experienced such advice differently.Written and interview comments suggest that they feltpatronized, devalued, and demoralized. As the increasingsuccess of consumers (often through consumer-run pro-grams) is demonstrating, assumptions about the limitedpotential of people with severe mental illnesses mayindeed reflect negative and inaccurate, though lingering,stereotypes of incompetence and limited recovery poten-tial. Consumers are increasingly rejecting these stereo-types as offensive and harmful (e.g., see Deegan 1990,1994). While unrealistic ambitions can, at times, be aproblem for consumers and guidance toward more realis-tic goals or slower steps a therapeutic contribution, con-sumer responses to the survey suggest that families andclinicians need to be aware of the problematic ways con-sumers may experience such guidance and of the possibil-ity that they are indeed underestimating the potential ofthe consumer.

Consumers' responses, moreover, show that thestigma experiences described can do harm (although,again, the optimist may be pleased that such harm was notmore widely reported). Stigma experiences have causedhurt, anger, discouragement, and lasting damage to self-esteem. They have led many consumers to conceal theirpsychiatric histories from others, to withhold informationon applications for jobs and licenses, and then to be bur-dened with chronic fear of disclosure in addition to thepain and stress of their illnesses. Experiences have ledmany consumers to maintain a secrecy that not only isuncomfortable but also may contribute to the very symp-

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toms—anxiety, depression, paranoia—from which theyare struggling to recover. Moreover, fears about stigmaappear to result in reluctance to apply for jobs, education,or insurance or even to seek treatment. In making produc-tive work less available, in limiting treatment resources(e.g., insurance) and discouraging treatment-seeking, incontributing to social isolation, and in generating naggingfears about disclosure and community rejection, stigmaexperiences have produced conditions antithetical to thegoals of recovery.

Another possibly troubling finding from this study isthat mental health caregivers were implicated repeatedly(e.g., by 28 of the 100 interviewees) as contributors tostigma, not just through their discouraging advice but alsotheir disparaging remarks and rejecting behavior. Andwhen those whom consumers especially look to for under-standing and support deliver instead ridicule and disre-spect, the consequences must be more devastating thanwhen discouragement comes from strangers. That con-sumers could point to numerous instances in which thosedesignated as "helpers" have shown stigmatizing behaviorstrongly suggests that caregivers need to examine andmodify their own attitudes and actions toward people withpsychiatric disorders. The messages of consumers—thatthey desire greater empathic understanding and wish notto be judged by their labels—would seem to be aimedparticularly at mental health caregivers, for whomempathic and nonjudgmental behavior is presumably cen-tral to their professional roles.

Among the more clearly positive results of this sur-vey is information about the ways consumers can and dodeal with stigma. Involvement in advocacy and speakingout are self-enhancing, and the courage and effectivenessshown by such participation help to restore self-esteemdamaged by stigma. The perceived helpfulness of talkingwith and being understood by other consumers supportsthe value of self-help and consumer support groups. Therewere indications also that the message of NAMI's currentCampaign to End Discrimination—that "mental illnessesare brain disorders" (National Alliance for the Mentally 1111996)—has helped some consumers resist stigmatizingattitudes that imply that moral and character flaws under-lie disturbed behavior.

Cautions and Limitations. The major caution in con-sidering these results concerns the nature of participants.While respondents were quite diverse, in many ways theyare not fully representative of the population of peoplewith psychiatric disorders. First of all, most respondentshad diagnoses of severe mental illnesses. Whether or notsimilar stigmatization occurs for those with less severediagnoses or for those who seek outpatient psychiatrictreatment for adjustment and relationship difficulties is not

addressed by these data. A broader sample that includespeople with less severe disorders would be useful in deter-mining the extent to which any diagnosis or psychiatrictreatment would lead to similar stigma experiences.

Our sample also was a relatively high-functioningone, given the nature of the disorders represented. Thosewhose disorders were not yet stabilized (e.g., those in hos-pitals), who were not recovered enough to obtain andrespond to our survey, who were not reached through oursurvey distribution sources (e.g., those not associated withNAMI or with treatment programs or who are homeless),and those who have not yet accepted their illnessesenough to talk about them would not have been includedin our results.

Furthermore, all of our distribution sources wereNAMI-connected, and some of our findings may havebeen influenced by that connection. Given that we havereached those associated with an advocacy group, it is notsurprising that many saw advocacy and public educationas important tools for fighting stigma, nor is it surprisingthat they espoused NAMI's assertion of mental illness asa brain disorder as an important message to the commu-nity. While this should not change the fact that advocacyand conceptualization of mental illnesses as similar tophysical illnesses were helpful to those with whom wespoke, it would be inappropriate to conclude that thosestrategies are being used by most consumers.

Respondents were also self-selected. They chose totake the time to return surveys and to speak with us. It iscertainly possible that these individuals were particularlysensitive to stigma or particularly motivated to contributeto our study because they had had troubling stigma expe-riences, thus skewing our results toward greater stigma.At the same time, it could be argued that those with schiz-ophrenia—constituting about half the population of psy-chiatric hospitals—were underrepresented in a sample inwhich the vast majority had been hospitalized and that,given schizophrenia's reputation as the most highly stig-matized psychiatric disorder, the underrepresentation ofpeople with schizophrenia skewed results toward lessstigma. Again, then, we cannot be certain that currentresults are indicative of the overall level of stigma experi-enced by the typical mental health consumer.

A final caution concerns the identified sources ofstigma. That families and mental health caregivers weremany times described as sources of stigma may reflect thefact that those are the people with whom consumers are inmost contact. Families and caregivers may be no moreprone to stigmatizing than other groups, but they are theones consumers have the greatest opportunity to observestigmatizing. It is also possible that stigmatizing fromfamilies and caregivers, to whom consumers are moreemotionally attached, may make a greater, more memo-

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rable impact, thus making it more likely that stigma expe-riences involving them would be recalled in the survey.

These cautions, however, do not negate the conclu-sion that many consumers—from different circumstances,from different parts of the country, with different diag-noses—have experienced stigma and discrimination intheir lives and have been adversely affected by it. Theseresults still may be seen as a call for continued attentionto stigma as a central and powerful experience of mentalillness and an alert that even those who care for and aboutconsumers can contribute. The clear messages of con-sumers—to give them empathic understanding and to notjudge them by their labels—are ones to be heeded by all.

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Acknowledgments

This work was supported by a grant from the NationalAlliance for the Mentally 111 Anti-Stigma Foundation.

The Author

Otto F. Wahl, Ph.D., is Professor, Department ofPsychology, George Mason University, Fairfax, VA.

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